Background: Compared with adults in the general population, autistic adults are more likely to experience poor mental health, which can contribute to increased suicidality. While the autistic community has long identified autistic burnout as a significant mental health risk, to date, only one study has been published. Early research has highlighted the harmful impact of autistic burnout among autistic adults and the urgent need to better understand this phenomenon. Methods: To understand the lived experiences of autistic adults, we used data scraping to extract public posts about autistic burnout from 2 online platforms shared between 2005 and 2019, which yielded 1127 posts. Using reflexive thematic analysis and an inductive ''bottom-up'' approach, we sought to understand the etiology, symptoms, and impact of autistic burnout, as well as prevention and recovery strategies. Two autistic researchers with self-reported experience of autistic burnout reviewed the themes and provided insight and feedback. Results: We identified eight primary themes and three subthemes across the data. (1) Systemic, pervasive lack of autism awareness. (1.1) Discrimination and stigma. (2) A chronic or recurrent condition. (3) Direct impact on health and well-being. (4) A life unlived. (5) A blessing in disguise? (6) Self-awareness and personal control influence risk. (6.1) ''You need enough balloons to manage the weight of the rocks.'' (7) Masking: Damned if you do, damned if you don't. (8) Ask the experts. (8.1) Stronger together. The overarching theme was that a pervasive lack of awareness and stigma about autism underlie autistic burnout. Conclusions: We identified a set of distinct yet interrelated factors that characterize autistic burnout as a recurring condition that can, directly and indirectly, impact autistic people's functioning, mental health, quality of life, and well-being. The findings suggest that increased awareness and acceptance of autism could be key to burnout prevention and recovery.
Early qualitative research indicates that autistic burnout is commonly experienced by autistic people and is associated with significant, negative consequences for their mental health, wellbeing, and quality of life, including suicidality. Findings to date suggest that factors associated with being autistic and the widespread lack of autism awareness and acceptance within society contribute to the onset and recurrence of autistic burnout. Based on autistic adults' descriptions of their lived experiences, a Conceptual Model of Autistic Burnout (CMAB) is proposed, which describes a series of hypothesized relationships between identified risk and protective factors that may contribute to, or buffer against, autistic burnout. The theoretical framework for the CMAB is based on the Social‐Relational model of disability and neurodiversity paradigm, and the Job Demands‐Resources model of burnout, and Conservation of Resources theory. The CMAB offers a holistic perspective for understanding individual, social, and environmental factors that can influence autistic burnout via various direct and indirect pathways. Autistic burnout research is in its infancy and the CMAB provides a foundation for future investigations about this condition. Lay Summary Although many autistic people describe experiencing autistic burnout, there has been little research on this topic. Based on descriptions of autistic peoples' lived experiences, we developed a conceptual model to explore how various risk and protective factors may interact to contribute to, or prevent, autistic burnout.
Background Early research indicates that autistic burnout is a chronic, debilitating condition experienced by many autistic people across the lifespan that can have severe consequences for their mental health, wellbeing, and quality of life. To date, studies have focused on the lived experiences of autistic adults, and findings suggest that a lack of support, understanding, and acceptance by others can contribute to the risk of autistic burnout. The study outlined in this protocol will investigate how autistic people with and without experience of autistic burnout, their families, friends, healthcare professionals and non-autistic people understand the construct of autistic burnout to identify commonalities and gaps in knowledge. Study and design Q methodology will be used to investigate participants’ subjective understandings of autistic burnout. Q methodology is a mixed-methods design that is well-suited to exploratory research and can elucidate a holistic and comprehensive representation of multiple perspectives about a topic. Participants will complete a card sorting activity to rank how strongly they agree or disagree with a set of statements about autistic burnout and participate in a semi-structured interview to discuss their responses. A first-order factor analysis will be conducted for each participant group, followed by second-order factor analysis to compare the groups’ viewpoints. The interview data will provide additional insights into the factors. Conclusion Q methodology has not previously been used to examine autistic and non-autistic people’s perspectives about autistic burnout. Projected study outcomes include enhanced understanding of the characteristics, risks, and protective factors of autistic burnout. The findings will have practical implications for improving detection of autistic burnout and identifying strategies to support autistic adults with prevention and recovery. The results may also inform the development of a screening protocol and identify potential avenues for future research.
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